Carcinoid Tumors

[kristikls]

I recently went into the hospital with what they thought was appendicitis and a week later after my pathology came back and I was told they had found a carcinoid tumor.

I'm 36 and have been experiencing extreme fatigue and some stomach upset but none of the flushing or other symptoms that seem to be associated with this. The surgeon from my appendectomy said that I needed to have my entire small intestine removed but I have found a neuroendocrine oncologist that I feel like I trust that I'm seeing again this week - but he has also said that he so far believes I need to have at least a portion of my intestine removed.

I'm confused as to how they can determine that more surgery is necessary before even running any additional tests...and it seems all I see anything about is surgery...I'm wondering if there is anyone that has done something other than surgery that has been successful to keep carcinoids from growing or coming back?

I'm very interested in corresponding with others that may have or are going through this. At this point, I'm not sure how big or small this will end up being...but just having others to correspond with is feeling very helpful right now. My hope is that I can also shed some light for others by what I'm learning through my own experience.

[K33]

Hi there

I've just come across your post and you situation is very similar to mine.

I am 31 years old and I had been ill for a couple of weeks with severe pains etc, went to the doctor who referred me to the hospital where I had an emergency op for suspected appenticitis. I was meant to have keyhole surgery, but woke up having had a right hemicolectomy. Apparantly my insides were a mess as my appendix had ruptured and had caused an abcess, so aswell as removing my appendix, they also had to remove a third of my bowel.

I was in hospital for a week recovering and thought that was the end of it, but when I went back for my results they told me that they had found a carcinoid incidentially on my appendix.

My surgeon didn't seem very concerned about the carcinoid and said that pathology report had come back to say it was benign, so nothing more needed to be done. I feel quite happy that everything is ok as they have removed everything around the appendix, however on searching through the internet it says that all carcinoids are cancerous, but it looks as they are a very slow growing type of cancer, so it you catch it early enough then it should be ok.

I think in your case it depends on the size of tumour too. do you know what size your carcinoid is? In my case mine was less than 1cm so I had quite drastic surgery for that.

I would be interested to hear from you and what you decide to do. My surgery was in February this year, and although the surgery is painful, I was back at work after 6 weeks. You just have to make sure you take it easy and take each day as it comes. If you have any questions about the surgery then I would be more than happy to answer them if I can.

It sounds as though carcinoids are quite rare and I have had trouble finding people in a similar situation to me, so when i saw your post I had to respond.

It does take a bit of time to get your head around the situation, I am now six months down the road and still have some days where I find it dificult to come to terms with it all, but after surgery you can go back to leading a normal life.

[kristikls]

Thank you so much for your reply. Your situation does seem similar to mine...my appendix was not very inflammed and they think the tumor could have been causing the pain...but there really isn't any way to tell.

I go back in tomorrow for more testing...the doctor wanted to wait until I was more fully recovered from my appendectomy to do too much more...but I guess they'll do a CT scan tomorrow and then I already have an appointment scheduled with an oncology surgeon next week. Apparently, where the tumor was (it was about 1cm long) was partly in the appendix but also touching the ascending colon so that is why they are recommending at this point removing a portion of the ascending colon. I guess they'll have a better picture of exactly what to do after this next round of CT scans.

So you're 6 months out now...do you feel like you're back to normal? I'm still getting very tired and having some pain from my appendectomy...although I do feel about 90% back to normal. The idea of going back in is definitely daunting. You said you were back at work in 6 weeks...but how long were you 'bedridden' after the surgery?

I would love to chat more if you're comfortable sharing information. My email is [moderator note: e-mail address has been removed] They told me that they'd need to do follow-up testing for years afterwards to make sure there aren't signs that it is recurring...have you done any of that?

[K33]

Hi there

I've replied to your email via msn, I hope you get the message.

Just also wanted to wish you loads of luck with your hospital visit today, I really hope things go as well as possible for you.

Hope you to hear from you soon.

[quilter]

I suggest to anyone diagnosed with a carcenoid to have complete test and scans done before anything else to see if it has matastasized...there is a huge difference in what you may want to do. Very few places specialize in this cancer...one being Iowa City, it is very rare and usually only discovered after symptoms which makes it hard to cure. There is more being learned all the time. Best to you. Quilter

[MarineMom500]

I would love to talk to you about how your doing now and what has happened as of now. I am a 47yr old fm and have been very sick for over a year. Nov.07 they did a CT scan and found a cysit on the right overy 2.7cm. and my Liver was enlarged to 17 cm, in April my appendix burst and was taken out then two weeks after surgery they told me of the carcinoid tumor they found and was over 2cm and had metastases. the cysit is now 4.2cm on the overy and my Liver has enlarged to 23 cm and the spleen has enlarged now as well. they have taken a wait and see we me and I cant bare it ! they have found a spot on the Liver now they believe is a (Fatty Deposit) now and I'm scared out of my mind. It take's everything I have to get up and make myself eat, work, or just be up . Please if you have any Info. or just want to e-mail , I hate that other people are going through this but it helps to know someone out there know's what you have and are still going through

[quilter]

I wish I could say something to comfort you but this cancer (as I see it) is like a roller coaster ride both metally and physically. Dealing with the emotional part is almost as hard as dealing with it physical. You need to do more research. It is very slow growing...every case is different. Once in stage 4 and it has metastasized there really is no cure-just treatments to help the symptoms. Medical facilities that specialize in it often have trial treatments to recommend. Has your Dr. talked to you about which stage you are in and offered you Sandostatin shots? I wish you well, dear friend. Quilter

[MarineMom500]

Dont know what stage, (was so upset ) Guess I need to ask that question. and he talked something about me doing my own shot's at home but just touched on it. They want to do one more Bio on the spot in the Liver, and may take out the spleen because of the enlargement. Has anyone else had the Liver and or spleen enlarge due to this Carcinoid (Stuff) If you would like to E-mail me its [moderator note: e-mail address has been removed] I really would like to talk to somone who has or is going through this. Thank you for responding to me. May God be with us all

[kristikls]

My experience (i'm the one who started this particular post) ended up being I think quite different than what you're looking at. They found what they thought was the primary tumor and I had about half of my colon removed along with the appendix...but all the lymphnodes came back clear so I just have check ups from here on out and we'll hope there is no recurrence. I think because my tumor was located in an area that was 'easily' removable they decided the best course of action was to be aggressive with it.

I also had cysts on my ovaries but went to my gynocologist and they are unrelated to any of the carcinoid issues...my gyno decided against removing them and we're just looking at them every 6 months.

My only piece of advice is to get multiple opinions...especially if you are uncomfortable with the opinions you're getting. I know how frustrating it is and doing all this research to make sure you're doing the right thing just gets confusing - there is so much mixed information. I took 3 doctors to find an oncologist I was comfortable with and it was worth finding him in the end.

Good luck to you...keep your spirits up - the body/mind connection does make a difference so do whatever you can to take care of you!

[MarineMom500]

I would Love to talk to someone with this same problem, if you could please e-mail me ...[moderator note: e-mail address has been removed] Let me know how you are and what if anything you have been able to find out.. Thank you and God bless you